Was bioethics founded on historical and conceptual mistakes about medical paternalism?

Bioethics has a founding story in which medical paternalism, the interference with the autonomy of patients for their own clinical benefit, was an accepted ethical norm in the history of Western medical ethics and was widespread in clinical practice until bioethics changed the ethical norms and practice of medicine. In this paper I show that the founding story of bioethics misreads major texts in the history of Western medical ethics. I also show that a major source for empirical claims about the widespread practice of medical paternalism has been misread. I then show that that bioethics based on its founding story deprofessionalizes medical ethics. The result leaves the sick exposed to the predatory power of medical practitioners and healthcare organizations with only their autonomy-based rights to non-interference, expressed in contracts, to protect them. The sick are stripped of the protection afforded by a professional, fiduciary relationship of physicians to their patients. Bioethics based on its founding story reverts to the older model of a contractual relationship between the sick and medical practitioners not worthy of intellectual or moral trust (because such trust cannot be generated by what I call 'deprofessionalizing bioethics'). On closer examination, bioethics based on its founding story, ironically, eliminates paternalism as a moral category in bioethics, thus causing bioethics to collapse on itself because it denies one of the necessary conditions for medical paternalism. Bioethics based on its founding story should be abandoned.     

什么是生命伦理学？——从历史发展的视角

生命伦理学是20世纪60年代兴起于美国的一门新兴学科,旨在应对生命科学和生物技术的发展或医疗保健的演变使人类面临的种种伦理难题。生命伦理学的兴起有着特殊的社会历史背景。它在发展过程中出现的一些里程碑式的案例,对生命伦理学的发展产生了深远的影响。从其发展特征上看,生命伦理学和医学伦理学紧密联系,有着更为广泛的研究内容和独特的专业特性。生命伦理学要有效回应现代医学和生命科学的发展给人类带来的伦理难题,既要准确地界定伦理问题,又要以适当的方式将伦理学基础理论应用到具体问题当中。对生命伦理学的基本理论进行概述。     

Patient-Centred Care: Qualitative Findings on Health Professionals’ Understanding of Ethics in Acute Medicine

In recent years the literature on bioethics has begun to pose the sociological challenge of how to explore organisational processes that facilitate a systemic response to ethical concerns. The present discussion seeks to make a contribution to this important new direction in ethical research by presenting findings from an Australian pilot study. The research was initiated by the Clinical Ethics Committee of Redland Hospital at Bayside Health Service District in Queensland, Australia, and explores health professionals’ understanding of the nature of ethics and their experience with ethical decision-making within an acute medical ward. This study focuses on the actual experience, understanding and attitudes of clinical professionals in a general medical ward. In particular, the discussion explores the specific findings from the study concerned with how a multi-disciplinary team of health professionals define and operationalise the notion of ethics in an acute ward hospital setting. The key issue reported is that health professionals are not only able to clearly articulate notions of ethics, but that the notions expressed by a multi-disciplinary diversity of participants share a common definitional concept of ethics as patient-centred care. The central finding is that all professional groups indicated that there is a guiding principle to address their ethical sense of the ‘good’ or the ‘ought’ and that is to act in a way that furthered the interests of patients and their families. The findings affirm the importance of a sociological perspective as a productive new direction in bioethical research.     

Bioethics in China

Historically, the preconditions for the emergence of bioethics in China. were political reforms and their applications. The Hanzhong Euthanasia Case and the publication of Qiu Ren-zong's academic work Bioethics played a significant role in the development of bioethics in China. Other contributory factors include the establishment of the Chinese Society of Medical Ethics/Chinese Medical Association (C.M.A), the publication of the Journal of Chinese Medical Ethics, and the teaching and education of bioethics in China. Major achievements of bioethics in China include the establishment of ethics committee and ethics review system, active international communication and cooperation among the academic circles, and the successful management of the 8th World Congress of Bioethics in Beijing in 2006. Chinese bioethics focus on native Chinese realities and conditions, absorb the international research achievements in relevant fields, and combine international ideas with traditional Chinese doctrines. Admittedly, there are still some aspects to be improved, yet bioethics has attracted a lot of attention from the core leadership in China and has gained sound financial support, which augers well for its further development. This article also briefly introduces the development of bioethics in Hong Kong and Taiwan, China.     

When Listening to the People: Lessons from Complementary and Alternative Medicine (CAM) for Bioethics

Complementary and alternative medicines (CAM) have become increasingly popular over recent decades. Within bioethics CAM has so far mostly stimulated discussions around their level of scientific evidence, or along the standard concerns of bioethics. To gain an understanding as to why CAM is so successful and what the CAM success means for health care ethics, this paper explores empirical research studies on users of CAM and the reasons for their choice. It emerges that there is a close connection to fundamental principles of medical ethics. The studies also highlight that CAM’s holistic ontology of health and illness has an empowering effect on people in caring for their health, and on an even deeper level, safeguards against biomedicine’s reducing image of oneself as biological body-machine. The question is raised what lessons bioethics should draw from this emancipatory social movement for its own relationship with biomedicine.     

Bioethics for human geneticists: models for reasoning and methods for teaching.

The ethical issues raised by the Human Genome Project (HGP) and by human genetics in general are not entirely novel. In fact, the ethical issues surrounding genetic research and the provision of genetic services fit into the evolution of bioethics, a field of inquiry which has its roots in concerns of the 1970s, concerns about the dignity and self-determination of individuals and about the development of medical technologies. Although bioethics has been largely occupied with patient-centered concerns, attention is currently shifting toward socially oriented issues, such as the justice of the existing health-care system. Genetic counseling has already incorporated many of the lessons of early bioethics and, as a profession, adheres to a consultand-centered ethic which reflects the values incorporated into the doctrine of informed consent, which is a cornerstone of bioethics. The mandate of the Ethical, Legal, and Social Implications Program of the HGP--to anticipate ethical problems arising from advances in genetics and to educate the public about genetics--reflects not only the nonpaternalistic approach of early bioethics but also bioethics' increasing attention to the ethical import of systemic and institutional factors, as well as an anticipatory and preventive approach to dealing with ethical concerns. Because bioethics has so much to contribute to current consideration of ethical issues in human genetics, it is important to provide training in ethics to those working in the field. Guidelines for using a case-oriented approach are suggested.     

International research ethics: progress, but not perfection

To the uninitiated researcher, bioethics can be a confusing and sometimes bureaucratic process. The recent debates in international research ethics have both increased understanding of contentious issues while extending confusion to the international arena. Here, we attempt to demystify bioethics, or more specifically international research ethics, by defining ethics in the context of morality, reviewing core Western ethical principles, and highlighting challenges in international research ethics.     

Assessing formal teaching of ethics in physiology: an empirical survey, patterns, and recommendations

Ethics should be an important component of physiological education. In this report, we examined to what extent teaching of ethics is formally being incorporated into the physiology curriculum. We carried out an e-mail survey in which we asked the e-mail recipients whether their institution offered a course or lecture on ethics as part of the physiology teaching process at their institution, using the following query: "We are now doing an online survey in which we would like to know whether you offer a course or a lecture on ethics as part of your physiology teaching curriculum." The response rate was 53.3%: we received 104 responses of a total of 195 sent out. Our responses came from 45 countries. While all of our responders confirmed that there was a need for ethics during medical education and scientific training, the degree of inclusion of formal ethics in the physiology curriculum varied widely. Our survey showed that, in most cases (69%), including at our Medical University of Graz, ethics in physiology is not incorporated into the physiology curriculum. Given this result, we suggest specific topics related to ethics and ethical considerations that could be integrated into the physiology curriculum. We present here a template example of a lecture "Teaching Ethics in Physiology" (structure, content, examples, and references), which was based on guidelines and case reports provided by experts in this area (e.g., Benos DJ. Ethics revisited. Adv Physiol Educ 25: 189-190, 2001). This lecture, which we are presently using in Graz, could be used as a base that could lead to greater awareness of important ethical issues in students at an early point in the educational process.     

THE VIRTUE ETHICS APPROACH TO BIOETHICS

This paper discusses the viability of a virtue‐based approach to bioethics. Virtue ethics is clearly appropriate to addressing issues of professional character and conduct. But another major remit of bioethics is to evaluate the ethics of biomedical procedures in order to recommend regulatory policy. How appropriate is the virtue ethics approach to fulfilling this remit? The first part of this paper characterizes the methodology problem in bioethics in terms of diversity, and shows that virtue ethics does not simply restate this problem in its own terms. However, fatal objections to the way the virtue ethics approach is typically taken in bioethics literature are presented in the second section of the paper. In the third part, a virtue‐based approach to bioethics that avoids the shortcomings of the typical one is introduced and shown to be prima facie plausible. The upshot is an inviting new direction for research into bioethics' methodology.     

Relative Values: Perspectives on a Neuroimaging Technology From Above and Within the Ethical Landscape

In this paper we contribute to “sociology in bioethics” and help clarify the range of ways sociological work can contribute to ethics scholarship. We do this using a case study of an innovative neurotechnology, functional magnetic resonance imaging, and its use to attempt to diagnose and communicate with severely brain-injured patients. We compare empirical data from interviews with relatives of patients who have a severe brain injury with perspectives from mainstream bioethics scholars. We use the notion of an “ethical landscape” as an analogy for the different ethical positions subjects can take—whereby a person’s position relative to the landscape makes a difference to the way they experience and interact with it. We show that, in comparison to studying abstract ethics “from above” the ethical landscape, which involves universal generalizations and global judgements, studying ethics empirically “from the ground,” within the ethical landscape foregrounds a more plural and differentiated picture. We argue it is important not to treat empirical ethics as secondary to abstract ethics, to treat on-the-ground perspectives as useful only insofar as they can inform ethics from above. Rather, empirical perspectives can illuminate the plural vantage points in ethical judgments, highlight the “lived” nature of ethical reasoning, and point to all ethical vantage points as being significant. This is of epistemic importance to normative ethics, since researchers who pay attention to the various positions in and trajectories through the ethical landscape are unlikely to think about ethics in terms of abstract agency—as can happen with top-down ethics—or to elide agency with the agency of policymakers. Moreover, empirical perspectives may have transformative implications for people on the ground, especially where focus on the potential harms and benefits they face brings their experiences and interests to the forefront of ethical and policy discussion.     

Challenges faced by research ethics committees in El Salvador: results from a focus group study

Objective:  To identify perceived barriers to capacity building for local research ethics oversight in El Salvador, and to set an agenda for international collaborative capacity building.
Methods:  Focus groups were formed in El Salvador which included 17 local clinical investigators and members of newly formed research ethics committees. Information about the proposed research was presented to participants during an international bioethics colloquium sponsored and organized by the St. Jude Children's Research Hospital in collaboration with the National Ethics Committee of El Salvador and the University of El Salvador. Interviews with the focus group participants were qualitatively analyzed.
Results:  Participants expressed the need to tailor the informed consent process and documentation to the local culture; for example, allowing family members to participate in decision-making, and employing shorter consent forms. Participants indicated that economic barriers often impede efforts in local capacity building. Participants valued international collaboration for mutual capacity building in research ethics oversight.
Conclusions:  Research ethics committees in El Salvador possess a basic knowledge of locally relevant ethical principles, though they need more training to optimize the application of bioethical principles and models to their particular contexts. Challenges increase the value of collaborative exchanges with ethics committee members in the United States. Further research on facilitating communication between host country and sponsor country ethics committees can maximize local research ethics expertise, and thus raise the standard of protecting human participants involved in international research.     

Don't Blame the ‘Bio’ — Blame the ‘Ethics’: Varieties of (bio) ethics and the challenge of pluralism

We tend to think that the difficulties in bioethics spring from the novel and alarming issues that arise due to discoveries in the new biosciences and biotechnologies. But many of the crucial difficulties in bioethics arise from the assumption we make about ethics. This paper offers a brief overview of bioethics, and relates ethical 'principlism' to 'ethical fundamentalism.' It then reviews some alternative approaches that have emerged during the second phase of bioethics and argues for a neo-Aristotelian approach. Misconceptions about ethical principles and ethical reasoning not only distort our views of the business of bioethics, but they also prevent us from facing up to the formidable problems posed by ethical pluralism in so-called liberal societies.     

Ethics and biomedical research

Ethics in biomedical research took off from the 1947 Nuremberg Code to its own right in the wake of the Declaration of Helsinki in 1964. Since then, (inter)national regulations and guidelines providing a framework for clinical studies and protection for study participants have been drafted and implemented, while ethics committees and drug evaluation agencies have sprung up throughout the world. These two developments were crucial in bringing about the protection of rights and safety of the participants and harmonization of the conduct of biomedical research. Ethics committees and drug evaluation agencies deliver ethical and scientific assessments on the quality and safety of the projects submitted to them and issue respectively approvals and authorizations to carry out clinical trials, while ensuring that they comply with regulatory requirements, ethical principles, and scientific guidelines. The advent of biomedical ethics, together with the responsible commitment of clinical investigators and of the pharmaceutical industry, has guaranteed respect for the patient, for whom and with whom research is conducted. Just as importantly, it has also ensured that patients reap the benefit of what is the primary objective of biomedical research: greater life expectancy, well-being, and quality of life.     

Instructors' practices in and attitudes toward teaching ethics in the genetics classroom

There is strong consensus among educators that training in the ethical and social consequences of science is necessary for the development of students into the science professionals and well-rounded citizens needed in the future. However, this part of the curriculum is not a major focus of most science departments and it is not clear if, or how, students receive this training. To determine the current status of bioethics education of undergraduate biology students in the United States, we surveyed instructors of introductory genetics. We found that there was support for more ethics education both in the general curriculum and in the genetics classroom than is currently being given. Most instructors devote <5% of class time to ethical and social issues in their genetics courses. The majority feels that this is inadequate treatment of these topics and most cited lack of time as a major reason they were unable to give more attention to bioethics. We believe biology departments should take the responsibility to ensure that their students are receiving a balanced education. Undergraduate students should be adequately trained in ethics either within their science courses or in a specialized course elsewhere in the curriculum.     

Anthropological and Sociological Critiques of Bioethics

Anthropologists and sociologists offer numerous critiques of bioethics. Social scientists criticize bioethicists for their arm-chair philosophizing and socially ungrounded pontificating, offering philosophical abstractions in response to particular instances of suffering, making all-encompassing universalistic claims that fail to acknowledge cultural differences, fostering individualism and neglecting the importance of families and communities, and insinuating themselves within the “belly” of biomedicine. Although numerous aspects of bioethics warrant critique and reform, all too frequently social scientists offer ungrounded, exaggerated criticisms of bioethics. Anthropological and sociological critiques of bioethics are hampered by the tendency to equate bioethics with clinical ethics and moral theory in bioethics with principlist bioethics. Also, social scientists neglect the role of bioethicists in addressing organizational ethics and other “macro-social” concerns. If anthropologists and sociologists want to provide informed critiques of bioethics they need to draw upon research methods from their own fields and develop richer, more informed analyses of what bioethicists say and do in particular social settings.     

CLINICAL ETHICS AND NURSING: "YES" TO CARING, BUT "NO" TO A FEMALE ETHICS OF CARE

According to a contemporary school of thought there is a specific female approach to ethics which is based not on abstract "male" ethical principles or rules, but on "care". Nurses have taken a keen interest in these female approaches to ethics. Drawing on the views expounded by Carol Gilligan and Nel Noddings, nurses claim that a female "ethics of care" better captures their moral experiences than a traditional male "ethics of justice". This paper argues that "care" is best understood in a dispositional sense, that is, as sensitivity and responsiveness to the particularities of a situation and the needs of "concrete" others. While "care", in this sense, is necessary for ethics, it is not sufficient. Ethics needs "justice" as well as "care". If women and nurses excessively devalue principles and norms, they will be left without the theoretical tools to condemn some actions or practices, and to defend others. They will, like generations of nurses before them, be condemned to silence.     

Clinical ethics and nursing: "yes" to caring, but "no" to a female ethics of care

According to a contemporary school of thought there is a specific female approach to ethics which is based not on abstract "male" ethical principles or rules, but on "care". Nurses have taken a keen interest in these female approaches to ethics. Drawing on the views expounded by Carol Gilligan and Nel Noddings, nurses claim that a female "ethics of care" better captures their moral experiences than a traditional male "ethics of justice". This paper argues that "care" is best understood in a dispositional sense, that is, as sensitivity and responsiveness to the particularities of a situation and the needs of "concrete" others. While "care", in this sense, is necessary for ethics, it is not sufficient. Ethics needs "justice" as well as "care". If women and nurses excessively devalue principles and norms, they will be left without the theoretical tools to condemn some actions or practices, and to defend others. They will, like generations of nurses before them, be condemned to silence.     

Public health ethics: asylum seekers and the case for political action

This paper is a case study in public health ethics. It considers whether there is a basis in ethics for political action by health professionals and their associations in response to inhumane treatment. The issue arises from Australia's treatment of asylum seekers and the charge that this treatment has been both immoral and inhumane. This judgement raises several questions of broader significance in bioethics and of significance to the emerging field of public health ethics. These questions relate to the role of health professionals in response to inhumane treatment of people in their charge; to the discipline of public health in light of a growing recognition of its ethical basis; and the role of public health and bioethical associations in response to ethical issues arising in a political context. It is argued that, in serious cases of humanitarian and human rights abuses affecting health and well-being, there is a case for political action by health professionals, academic and professional institutions, and associations of public health and ethics.     

WHAT CAN HISTORY DO FOR BIOETHICS?

This article details the relationship between history and bioethics. I argue that historians' reluctance to engage with bioethics rests on a misreading of the field as solely reducible to applied ethics, and overlooks previous enthusiasm for historical perspectives. I claim that seeing bioethics as its practitioners see it – as an interdisciplinary meeting ground – should encourage historians to collaborate in greater numbers. I conclude by outlining how bioethics might benefit from new histories of the field, and how historians can lend a fresh perspective to bioethical debates.